BIRMINGHAM, Ala. (WIAT)- Sarah Katherine (Suki) Bateh sits on the front pew at Saint George Melkite Greek Catholic Church every Sunday morning.
“There is something about this place that she never cries and she is always happy. She sees something here that we don’t,” said Suki’s father, Brian Bateh.
Suki’s mother, Marie, believes that her daughter can feel the love their family receives from their church family.
“They are constantly praying for her and constantly praying for a miracle,” Marie said.
Suki has a rare genetic disorder called Rett Syndrome. The unique disorder is often misdiagnosed as autism or cerebral palsy. It almost always affects girls starting in infancy. Marie says children with the syndrome can still understand the world around them. Suki communicates through a special computer.
“If you can imagine knowing what you want to do, but not being able to get your body to carry out any of those motions, it’s heartbreaking,” Marie said.
“A child is born with Rett syndrome every 90 minutes. So they are out there, but they are just not getting diagnosed,” said Marie.
“I wanted to do everything for her, but I didn’t know how to do it. I thought about all the other families and wondered who they would turn to when they get a rare genetic disorder diagnosis like this.”
In 2012, the Bateh family founded the Suki Foundation. The foundation is a resource for families to help change lives, raise awareness and find a cure.
The Bateh’s say Suki has taught their family how to truly love each other. Her love has also reached hundreds of lives outside of their household.
“There is no better gratification than knowing you’re helping someone in helping their child,” Brian said.
The family believes that researchers are very close to finding a cure as the syndrome has been cured in laboratory mice. For now, Marie ask that the community spread Suki’s story to raise awareness.
“I don’t like the phrase, ‘let’s just wait and see.’ I like the phrase, ‘get the therapy and let’s get her where she needs to be,” Marie said.
The third annual “Raise the Roof for Rett” event is set for Saturday, Nov. 1, 6 – 10 p.m. at LINCPoint (101 Oslo Cir., Birmingham 35211.) The annual fundraiser benefits the Suki Foundation and Rett patients at Children’s of Alabama.
Tickets are $50 per person in advance or $60 at the door. Advance tickets may be purchased online at www.smartparty.org/CureRett.